Helping women with chronic illnesses
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Endometriosis and Fibromyalgia

Today’s Guest Blogger is Stacy.

stacy

Some of you may recall her because she previously did guest blogging for ‘Jeanne’s Endo Blog’. Stacy and I are “in person” friends. I met Stacy through my local endometriosis support group. Unfortunately, she has since moved out of state but we remain in touch online. She is a passionate advocate for endometriosis and was diagnosed relatively recently with fibromyalgia. She has learned numerous coping mechanisms on her chronic illness journey. Here is her story…

I have endometriosis and fibromyalgia and am stronger for it. I suffer through and (sometimes) overcome more challenges in a day than many healthy people overcome in a month.

When I was eleven my period started and brought with it agony, embarrassment and the ability to bear children (resulting in my wonderful daughter many years later). I knew something was wrong but doctor after doctor told my parents I was a hypochondriac. Because I lived in South America, I faced the challenge of a language barrier and my history of parasites confusing doctors since my period also brought with it diarrhea.

When I was twenty four I got married and gained health insurance along with my new husband. I was now a grown-up who knew something was wrong and had the health insurance to find out what was happening and I was determined to get better. A number of doctors and one laparoscopic surgery later I was told I had endometriosis and needed to get pregnant to “cure” it. I already felt sick and couldn’t imagine adding a baby to my weak health and our young, limited budget so I started looking for answers. Eight doctors later I had been told how selfish I was for refusing to get pregnant since I was most likely stealing my husband’s chance to be a dad but I was determined to find another answer.

My primary care physician listened to me and told me she would find an OBGYN who would do the same and she kept her promise. My new doctor knew a lot about endo and vowed to help me manage the pain. I embarked on a search for relief: acupuncture, physical therapy, tens machines, cox2 inhibitors, narcotics, a presacral neurectomy, laparoscopic surgeries, massage, running a support group, reading everything I could find….

[Editor’s Note: As Stacy and I have discussed in the past, a presacral neurectomy is considered a ‘last resort’ surgery and is also considered major surgery. Stacy did a great deal of research before making the decision to have this type of surgery performed].

What I learned during my search:

My former husband didn’t want a weak and defective spouse. My health improved when I was only focused on me and not dealing with a selfish spouse. I ultimately remarried and we were blessed with a wonderful little girl. My husband knew I was sick when we got married and he stands by me while I battle with my body. Some days he is very supportive and other days he gets frustrated – as do I.

The presacral neurectomy took the edge off the pain. My hemorraging lightened after my pregnancy. I was glad I got pregnant on my timeframe – not on endo’s timeframe.

I am strong. There is no shame in telling people I struggle physically. I am my only advocate and must fight for a chance at having healthy days.

My advice to you is to fight until you find a doctor who will work with you to create a plan for you to be as healthy as you can. Count your blessings daily and know that your illness will make you a stronger and more compassionate person.

There is no shame in saying, “I am sick and do the best I can each day”.

– – Stacy

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis and Fibromyalgia

25 comments

1 Jannie FunsterNo Gravatar { 06.05.09 at 3:39 pm }

Hi!

It sure sounds like you finally ended up with a wonderful supportive husband, Stacy. It took me the second try too, to get the right one.

I like your advice… “My advice to you is to fight until you find a doctor who will work with you to create a plan for you to be as healthy as you can.” That reminds us all that we do not have to stick with just any doctor that comes along — we deserve care from caring ones.

Thanks!

And thanks, Jeanne!

Jannie Funster’s last blog post..Another chance!

2 JeanneNo Gravatar { 06.05.09 at 3:47 pm }

Jannie,

Stacy’s husband is a very nice guy.

I liked that quote from Stacy too. It’s so important for patients to advocate for themselves!!

Thank you!

Jeanne

3 AllisonNo Gravatar { 06.05.09 at 5:21 pm }

Love todays post! Thanks for sticking up for yourself stacy! Sucks that we have to be our own medical “experts”, but, persistance pays off!!!

4 JeanneNo Gravatar { 06.05.09 at 5:29 pm }

Allison,

Stacy did a great job of summing up the whole concept, didn’t she? It is unfortunate that so much burden is put on the patients. On the other hand, if patients do their research and advocate for themselves, they can better understand what’s happening and become empowered by the process.

Persistence is a huge asset in these situations!

Jeanne

5 YayaNo Gravatar { 06.05.09 at 5:43 pm }

Stacy,
Thank you for sharing this. It dumbfounds me how doctors say having a baby is the “cure”. Good for you for standing up for yourself and not settling for weak answers.
Yes, having a chronic illness can certainly take a toll on a relationship. When I’m not well and am skipping events it puts quite a rift between my husband and I. He just doesn’t get that I am so fatigued I simply can’t do things sometimes. One of those things in life you only understand if you’ve experienced it.
So glad you were blessed with a daughter. My endo has not done the same miracle for me.
Alicia

Jeanne,
Great guest post you got here!
Alicia

Yaya’s last blog post..Friday Fragments/Focus Friday

6 JeanneNo Gravatar { 06.05.09 at 7:07 pm }

Alicia,

I couldn’t agree with you more that what Stacy encountered is wrong. Heck, it’s downright appalling. I remember when that doctor made the “selfish” comment to her like it was yesterday. (Yes, that doctor was from this area because that was before Stacy moved). I was just blown away by it at the time and made a mental note of it since local endo group members might ask me about that doctor at a later date. When I hear stories like that, I like to stow them away in my brain because the name will often resurface at another time. That doctor was really rude and inappropriate to Stacy.

Yes, any relationship where one or both partners is chronically ill can be strained by it all, to say the least. My husband, God love him, doesn’t understand my limitations at times. It’s a very common theme that I have heard over and over from endometriosis support group members. After attending monthly endo support group meetings for 16-17 years, it became very obvious that even the strongest couples can go through extreme adversity associated with how illness affects just about everything. The most supportive spouse is going to have times where the frustration level and/or lack of understanding certain things reaches a boiling point/breaking point. You’re right that only those who have firsthand experience can truly “get it” all the way. The most supportive and empathetic spouse or partner in the world is bound to have times of complete and utter frustration with it all. This is really common.

I watched many of our endo support group members go through divorces since the local group was started in 2001. It was a bit unnerving for me to watch it happen to so many people from our group.

Alicia, I can’t wait for your adoption process to move forward!!

Stacy really did a nice job of covering the importance of advocating for yourself and persevering. No one should have to see that many doctors to get relief but God bless her for sticking it out and switching until she got a team of doctors who would listen to her and help her feel better. Stacy’s persistence is a great example for others to follow. I remember when she went through some of those doctor switches. She was smart to switch away from doctors who were not helpful and who, in some cases, made matters worse.

By the way, Stacy’s experience being told to get pregnant has happened to many women. When I went in for my 2nd laparoscopy pre-admission testing (back in the day when they did the medical history intake in person)… a doctor looked through my forms and listened to me describe my history and he asked me, “do you know what will cure your endometriosis?” Well, I knew by this point that endo has no cure but I wanted to hear what he would say. So I replied, “what’s that?” He then proceeded to tell me that I should get pregnant to “cure” my endometriosis. To use your word, I was dumbfounded. As angry as I was at this comment, I forced myself to be calm because I wanted to reply to him as calmly as possible. I calmly told the doctor that the “pregnancy cures endo” notion is a myth and then I quoted sources to him (because I had them committed to memory from reading everything and anything I could get my hands on to do with endo by that point). He gave me a condescending smile and replied, “you have a right to your opinion”. Huh? I am not telling you my opinion, doctor. I am quoting reputable sources of endometriosis information.

Gee, at the time I was young, single, not even in a relationship with someone, not financially stable… and for all he knew I wasn’t even able to conceive anyway. How irresponsible can you get? In no way, shape, or form was I ready to be a parent when this man proposed that I should just “go get pregnant”. This man had met me for the first time about two minutes before he said this to me. Would it make sense to walk up to a person on the street and tell them to get pregnant? Seriously that is about equivalent to what this was. I was flabbergasted that this man was looking me in the eye and telling me to get pregnant to “cure” my endo. I had read about doctors saying this but it was always written in past tense… This was always written about as if the entire medical community “knows better now”. Yet here he was “prescribing pregnancy” for my endo.

Clearly he was going to continue thinking that pregnancy is a cure. More scary than that, he was working in a capacity where he’d have ample opportunity to spread this myth widely to others. Including other patients who might not have read the books about this being a myth. So, when I finished my pre-admission testing I drove home, got out the phone book, called the hospital, found out who would oversee this doctor, and reported him.

This was about the time I transformed from a quiet little mouse into a roaring lion when needed. I used to be painfully shy. Endometriosis forced me to change. The situation Stacy described and the situation that I just described are just a couple of examples of the types of things that, for me, made it IMPOSSIBLE to stay quiet/shy/passive. I had to come out of my shell for self-preservation. I had to do it for survival. This is just one example of how I believe chronic illness has made me stronger than I would otherwise be. I’m obviously not going to win any bench-press contests! However, I have been through major adversity… and lived to tell the tale. That trial by fire can breed strength. I meet women all the time that are basically the same way. I think endo forces us to be more assertive with health care professionals and to educate ourselves simply to be able to ascertain which doctors are qualified to treat endo and which ones are not…. and to get the relief we need and deserve.

Yes, kudos to Stacy for a job well done on this post!

Jeanne

7 SonjaNo Gravatar { 06.05.09 at 7:39 pm }

Very well written, thanks for sharing your story Stacy!

Sonja’s last blog post..Angry/Scared Vent

8 JeanneNo Gravatar { 06.05.09 at 7:52 pm }

Thanks, Sonja! 🙂

9 Dorian aka coffeesister |_|)No Gravatar { 06.06.09 at 1:31 am }

What a beautiful note to end on..

There is no shame in saying, “I am sick and do the best I can each day.”

Physical weakness should never be confused with any weakness of character. Speaking of character, illness is inescapably difficult on those we love yet anyone who is frustrated with us rather than the illness is not actively loving us back. It’s true for everyone but non-negotiable for anyone who’s ill; in all of our interactions, we must be (& feel) heard.

(|_|*cheers*|_|)
“The first duty of love is to listen.” – Paul Tillich

Dorian aka coffeesister |_|)’s last blog post..YOU so silly!

10 JeanneNo Gravatar { 06.06.09 at 1:35 am }

Dorian,

Yes, I loved that quote from Stacy.

You are absolutely correct on all counts.

Great quote. 🙂

Jeanne

11 NeeneeNo Gravatar { 06.06.09 at 1:45 am }

SOME women are helped by pregnancy, their terrible cramps end. How many female relatives of mine have been in that fortunate position, in a sense.

Of course it’s not the reason to get pregnant, but can we stop acting so appalled when a doctor who doesn’t understand endo suggests it?

I use bio-identical progesterone which HAS helped me with pain levels. Progesterone goes up during pregnancy and nursing. I wish someone had suggested progesterone to me YEARS ago, DECADES ago. I used to wonder why pregnancy helped some women. Now I know.

Using it several weeks a month has helped SO much with heavy bleeding. Again, if only I had known.

Good luck to all.

12 JeannetteNo Gravatar { 06.06.09 at 7:43 pm }

Wow, I really loved that. It is a tough road to live with a chronic illness and still have spunk, which clearly you do! I really enjoyed reading that piece, in particular, There is no shame in saying, “I am sick and do the best I can each day”.
Yes we all do the best we can and are very lucky when we have a spouse/family that “gets it.” I will do my very best to remember that I do the best I can each day because I DO… Thanks so much for posting that article.

Jeannette’s last blog post..I HAVE HOPE AGAIN!!!

13 JeanneNo Gravatar { 06.06.09 at 9:58 pm }

Yes, some women do experience symptom relief during pregnancy. This does not make pregnancy a cure for endometriosis (such as a doctor tried to tell me and such as doctors told many women, wrongly, for decades).

A potential for temporary symptom relief during pregnancy does not make it acceptable for Stacy’s doctor to label her “selfish” for not trying to conceive when she was not ready to do so.

Making the life-altering decision to try to conceive a child (whether or not one would be able to conceive and carry to term being a separate issue since endometriosis itself causes infertility for many) based on health care professionals spreading misinformation about “pregnancy curing endometriosis” is unethical.

If a doctor doesn’t understand endometriosis then he/she has no business treating patients for their endometriosis (whether in an office setting, a hospital setting, etc.)

The suggestion that was made to me (and again this was by an MD who was taking my medical history going into a laparoscopic surgery for endo removal) was that I should “get pregnant to cure my endo”. So, yes, appalled is the word for how that made me feel. I was not just upset for myself but because I knew the odds were very slim that I would be the only patient who would be given this advice from this doctor simply considering where he worked. Odds were darn good this doctor would keep telling this to endo patients.

I am happy for you that you have obtained a reduction in your pain levels. That’s great.

One thing worth mentioning regarding symptom relief is that each patient is different and what helps with symptom management for one person might be more or less effective for another.

As far as wishing to know about something to help with a symptom like heavy bleeding, I wish to heaven I had known about homeopathics back when I was 13. Instead, I didn’t use homeopathics for endometriosis symptoms until well into my 30s when a fellow endometriosis patient told me how helpful they could be. If only I had known decades earlier about this option, I would have enjoyed the much lighter bleeding I have had in the past few years. (In the decades that I experienced hemorrhaging problems, none of my health care professionals ever suggested I try homeopathics).

There is a distinction between advising patients to “get pregnant to cure their endo” or labeling patients names such as “selfish” (for not being bullied into trying to conceive when they are not ready, for whatever reason, to try to do so)… and suggesting that pregnancy can provide temporary symptom relief. Cure and symptom relief are not equivalent.

Jeanne

14 JeanneNo Gravatar { 06.06.09 at 10:19 pm }

Jeannette,

I’m glad you liked Stacy’s article. I had the good fortune of meeting Stacy through my endometriosis support group a few years back and she is a wonderful advocate for herself and the endo cause…

She is also a great role model for other patients (regardless of what their chronic illness is)… Our best is all we can do and if we beat ourselves up about all of the things we can’t do, things can get pretty miserable! I like the way Stacy pointed out that if we are doing our best despite our limitations, that’s what really counts.

Yes, having a spouse/family that “gets it” is HUGE. Yes, you do your best and that’s all you can do! 🙂

Jeanne

15 PatriciaNo Gravatar { 06.06.09 at 10:21 pm }

very interesting blog site. I have been involved with chronic healing for most of my life. Yep you just have to persist and keep trying to find a Dr. or healer who will listen.

Came over from Jannie’s site…

Patricia’s last blog post..How We Met Entry #3

16 JeanneNo Gravatar { 06.07.09 at 12:40 am }

Welcome Patricia!

I don’t know if you remember but I had visited your site awhile back, as I had found you through Jannie as well, and I really like it! I am in the unfortunate position of not having enough energy/time in the day recently to possibly keep up with reading all of the blogs I want to read. 🙁

It has been all I can do to keep up with my own blog and trying to reciprocate people who have taken the time to comment on my site. I can never seem to catch up!

I will have to take a look at your site again. As I said, it has been awhile. I do distinctly remember it being uplifting and inspirational!!! I didn’t realize you’ve been involved with chronic healing for most of your life. Yes, persistence is key for chronically ill patients… as is searching for practitioners who will truly listen like you said.

Thank you so much for visiting and commenting. 🙂 I certainly have met some wonderful people through Jannie! Speaking of Jannie, don’t forget to comment on my Blog Giveaway post for a chance to win her CD. I will be randomly picking a blog comment from that post for the CD Jannie just released. Of course, I realize you may already have your own copy. I know I see your name on Jannie’s blog a lot. Just the same, if you did win it you could always turn around and do a Jannie CD giveaway with it on your blog, I suppose? 🙂

Take care and thank you for taking time to stop by and check out my new blog. I appreciate it!

🙂

Jeanne

17 terNo Gravatar { 06.07.09 at 12:41 am }

Thank you for the comment you left on my blog today! Feel free to come again for another visit! 🙂

ter’s last blog post..Follower of the Month: Ya Ya

18 JeanneNo Gravatar { 06.07.09 at 1:09 am }

ter,

Thank you for commenting here! It had been awhile since I had been to your site(s) so when I saw Alicia’s post, I hopped right over there. Great interview with her! Yes, likewise!!! 🙂

Jeanne

19 SnaggleToothNo Gravatar { 06.07.09 at 5:19 am }

A very inspiring story on overcoming your difficulties n how others can learn from your experience!

SnaggleTooth’s last blog post..Deck Decs

20 Twitted by jeanneendo { 06.07.09 at 5:23 am }

[…] This post was Twitted by jeanneendo – Real-url.org […]

21 JeanneNo Gravatar { 06.07.09 at 3:49 pm }

SnaggleTooth,

Thank you for yet another comment. Jannie sure does send me nice readers. 🙂

Yes, I think stories like the one Stacy shared are inspirational to others. It really does help to share experiences with others… It makes everyone feel less alone and more understood.

Thank you.

Jeanne

22 YayaNo Gravatar { 06.08.09 at 8:08 pm }

Neenee,
I guess what is so appalling is that doctors should know better than to say the word “cure” and give patients false hope. My mother has endo and sure, her pregnancies made the symptoms disappear for years and years but then it came back with a vengeance and she needed a hysterectomy. So, pregnancy does not cure, but perhaps, can alleviate symptoms for a short time. I believe there is a difference.
Yaya

Yaya’s last blog post..RTT-Dear Letters

23 JeanneNo Gravatar { 06.09.09 at 12:56 am }

There is no cure for endometriosis.

That is the part that scares me… that so many doctors over the years have stated or implied otherwise.

Misinforming and confusing patients does not assist them in making informed decisions that are in the best interest of their health.

Jeanne

24 Endometriosis and Fibromyalgia Follow Up — ChronicHealing.com { 06.18.09 at 12:49 pm }

[…] on June 5, 2009 Stacy had written the post Endometriosis and Fibromyalgia. If you have not yet read it (including blog comments made back to it), I encourage you to do so as […]

25 JeanneNo Gravatar { 06.18.09 at 2:11 pm }

See link above (#24) for a follow up to this blog post…

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